News & views Members blogs Peer Advocacy PEER-ADVOCACY By Alan Hartman The definition of Peer-Advocacy means representing each other in the same position. In mental health if you use mental health services, your needs can be different, but not cause a conflict of interest. Providers of mental health services, elected politicians would cause a conflict of interest. Some Self- Advocacy groups do not allow mental health users that have never been in hospital to become members. They maintain their interests lie only with community services. They also have no experiences as an in-patient and their views and opinions causes’ conflict. Other Self-Advocacy groups accept community mental health users. There is no consensus! The decision is left up to the group. There is also terminology for groups to take into consideration. Severe, mild mental health problems and the more recent terms, primary, secondary mental health problems. The main two sources of Peer-advocacy The first source of Peer- Advocacy comes from making friends when, using mental health services. Example, in hospital, at a day centre or drop-in etc. Advantages: There is a spontaneous exchange of skills and helping each other, you choose your peer and usually it’s a long relationship. Disadvantages: A person unable to make friends has no peer, their rights and needs are limited, People with no peer, are most likely to have a greater risk of their illness recurring and It can cause a two tier system. The second source of Peer- Advocacy comes from Self-Advocacy groups (User groups/ Patient Councils) usually the members of the group, whom are good at speaking and have some knowledge of the mental health system, become the advocates. Advantages: People who are not close friends, can be represented, the group supports the advocate. Disadvantage: There is less reciprocal exchange of skills from the person being represented. Group advocates tend to be put under pressure, which can result in the advocate becoming ill. Peer- Advocate fully representative of their peer Because, the peer advocate is in or could be in exactly same situation/position as his peer, he/she has a better chance of meeting the needs of someone. Experience: I was asked by a mental health user to advocate for her needs on her CPA (Care Programme Approach). She also had an advocate employed by an independent agency representing her also. I was very passionate compared to the independent advocate. I done most of the talking and challenged the service providers on the needs that they would not meet. I criticised the service providers, also produced facts. I managed to retain a service, which they were withdrawing, she continuously pointed out she needed. The independent advocate would not make no challenge or criticise decisions made by the service providers. I don’t think that he was a bad advocate, but was restricted, [a] the mental health trust paid the grant to his agency, [b] He was not aware of the services the trust provided also, he never used them! [c] It seems that he had to keep to this imaginary line, of not going to far, which many professionals obey. These points inevitably limited his freedom to represent his client. A peer advocate is unfettered from theses problems. The Heart of Advocacy An advocacy project either does not exist or is pure tokenism with out peer advocacy. In one hospital that I had several admissions over the years, peer advocacy started to grow. People were beginning to have their needs met and injustices addressed. There was no awareness, no written policies, not mentioned in health directories or other publications, etc. Financially the cost was almost free. The hospital trust decided to pay an agency for an Advocacy Project, which included one paid independent advocate and other advocates on a voluntary basis. The project was well publicised and there were attractive leaflets explaining all that the service provides. Unfortunately this was not the case in practice. They could not get the voluntary workers and when they did they only stayed for a short period of time. Peer advocacy disappeared! Patients were lucky to see an advocate on the ward once a month. It’s important to point out that only the most motivated patients (skilled in self advocacy) received a service from paid independent advocates. The more incapacitated you were usually meant you had no representation. Workers employed in advocacy projects must ensure that peer advocacy is encouraged, protected and supervised. 95% approximately of advocacy is required from peer advocacy, aims to replace them with employed advocates is a “Fools Paradise”. Types of Advocacy There are numerous different types advocacy, which usually depends on the individual’s skill, which is discussed in detail in later chapters. Social Advocacy is probably the most important, which peers develop skills mainly spontaneously. They are not only able to communicate to the level of understanding, but make friends if they choose. Self -Advocacy, which peers need to express and speak up for themselves. Citizen advocacy, Lay legal Advocacy (McKenzie Friends). Group and Public Advocacy. Over the years others and myself have been able to do and achieve with success these types of advocacy. Most mental health users are able to make a difference, when attending and supporting his peer at a CPA, Review at a ward round, Day Centre Review etc. Experience: It was decided at a local Day Centre in the late 1980s, at members review, another member of the Centre should be allowed to sit on the review. This was because staff considered that members on their own, felt overwhelmed and it was difficult to access the member’s needs and progress. Myself I was very vocal on behalf of the person I was advocating for. I made a big difference especially obtaining my peer’s needs. It was observed that even if a member did not say anything on behalf of his peer, progress was made, compared if the person attended on his own. The two concerns were [a] Members choice if he/she wants another member to attend. [b] Members to incapacitated to make a choice (This was rare). This type of advocacy the majority of peers can participate in. If we however go to the other side of the spectrum, lay legal advocacy very few peer advocates are able to do. I myself have done this type of advocacy. I must admit, when in court, I do worry of becoming ill. Law Centres, Citizens’ Advice Bureaux, Advocacy Agencies are, more able to provide this type of advocacy. Qualifications I have no qualifications. I have attended training sessions over the years and studied welfare benefits and law, especially on Mental Health. The fundamentals of peer advocacy are, the skills to talk up for some one else and having some insight in mental health issues is easily enough. Training & Education It’s unwise to start talking about the mental health law, code of practice, appeals, CPA’s, national service frame works etc, at first. With peer advocacy shadow training is most important to start with. The peer builds confidence and discovers the modus operandi (The particular way of working). Lay advocacy is a little different to professional advocacy and experience advocates, who actually use mental health services, are the best teachers. Rogue Peer Advocates We have rogues in every walk of life and mental health peer advocacy has its share. The problem is the historical stigmatic culture of mental illness. If one mental health patient commits an immoral or criminal offence, then they are all tied with the same brush! This has led to the abolishment of peer advocacy and self-advocacy groups in particular areas. Experience 1: A consultant psychiatrist was very upset over the way a group advocate treated one of his patients. The advocate made a deal with his patient. If he is successful in his claim for a Community Care Grant, then the patient gives the advocate 50%. This was £400 of the patient’s grant. The trust and his group done nothing about it! Experience 2: A consultant psychiatrist was very upset, because his patient was homeless and nowhere to sleep for the night. A peer advocate from the user’s group took the patient to a 24hrs shelter and paid his fare money and bought him something to eat out of his own money. Obviously we would like advocates from experience 2, not to many of them! Also there are not many advocates in experience 1, only this type can damage so many. There are two options that must not be taken by trusts, when criminal offences or unscrupulous exploitation of much more vulnerable patients, a] Stop advocacy. b] Turn a blind eye. Both are disastrous. The right action to be taken is to treat the situation with equity and equality. If a criminal offence is committed then it’s a police matter. The individual, who is exploiting patients as in experience1, should be stopped from advocating. Many advocates want to help their peers not exploit them. Protection & Supervision of Peer Advocates Supervision is advisable, if you are a group advocate. The amount of stress you are under can precipitate a recurring mental health problem. I would think it would be wise that advocates representing a group must have supervision and should be included in the group’s constitution. We must try to avoid a conflict of interest. Modes of Supervision and Supervisors. • Independent Nurse, Social Worker, Manager outside the area you use services. • Nurse, Social Worker, Manager, although employed in the services that the advocate uses. • Care Co-ordinators. • Employees from an advocacy agency. • Mental health agencies, (Local Minds, Non-Statuary services etc. • Sub-Committee of your Self- Advocacy Group (Users Group). The type of supervision depends partly on the individual. I have a recurring mental health problem. It’s best for me to have a nurse as a supervisor if possible. Another advocate may feel a supervisor employed from non- statuary agency. Experience: I had a meeting with a nurse on how to get a supervisor in case I become ill due to the advocacy I undertake. We both agreed in my case and others it should not come from the service we use, which would cause a conflict of interest. After a brief discussion, the nurse, and myself requested, that the trust, fund a project to pay for supervision outside the area, we use services. The mental health trust gave us the cold shoulder! No attention or discussion was given to the proposal. It was crucial that I had supervision, so I chose the next best scenario. This was a nurse employed by trust who was not directly involved. Even if your Care- Coordinator acts as your supervisor, although with all honesty will cause a conflict of interest your health is protected and you are able to cope better with advocacy. Once again I must stress that the type of supervision is dependent on the individual. A worker from Local Mind or another organisation etc may meet the Peer Advocate’s need. Intimidation & withdrawal of services from peer advocates Unfortunately to often, peer advocates lose support and have their services withdrawn on account of their advocacy and not because they are better or do not need services no more. Experience: In the early 90’s I had my service withdrawn. The reason I was given that I was too dangerous to cope with, and my diagnosis has been changed to personality disorder and therefore did not meet the criteria of the service. I was left to my own devices with two children. Eventually I became ill and was admitted to a hospital miles away from where I lived and my children went into temporary care of the local authority. As far as I was concerned this was because, they did not want me representing views of the user group via the press at the time. I also received verbal innuendos not to represent some particular patients. This proven in a court of law would be considered much more serious then criminal negligence! We must protect advocates and take action against such perpetrators. Cross- Area Peer Advocacy Sometimes you advocate outside your own area you use services. I’ve been requested either by a friend or group of mental health users, who have no advocacy. It’s important that the mental health users decide whether peer advocates from a different area represent them not mental health providers. There are many areas that lack peer advocacy and skills, but the big disadvantage of cross-area peer advocacy, it stops the local area from developing their own skills and peer advocacy project. Obviously for peer advocates to train and develop service users in a different area is the remedy. Peer Advocacy a measurement of a caring a humane sociality!! Peer Advocacy is not about careers and pursuing financial rewards. It’s “Patient caring for Patients”, in the same or similar situation. If Peer advocacy is none existent or pure tokenistic, it is evidence of the lack of care people give to each other in society. When Peer Advocacy is at it’s best, service providers start caring about service providers and provide quality, humane and caring services. SOCIAL-ADVOCACY For me this is the most important type of advocacy, because almost everybody can contribute and helps people to make friends, communicate, decrease loneliness and most important helps to diminish recurring attacks of your mental health problem. Differences between provider and user Service providers are encouraged to be friendly, but discouraged to be friends with users, which has been the mental health culture for many years. Worst still if a provider and user have a close relationship, the service provider usually is at high risk of losing he/she job or at the very least damage the provider’s career. Experience: By mutual agreement a nurse on the ward and patient developed a normal intimate relationship. There was no actual evidence of any exploitation of the patient’s mental condition. However it was assumed any user as a in-patient was incapable of making decisions. The mental health act is very strict and patients on sections, legally have their rights reduced to a child. The nurse was dismissed and after some months of being discharged the patient committed suicide. It was one of the saddest experiences that I’ve endured. It’s important to protect people who are unwell. We must not forget we are human and must not destroy, innocent friendly or intimate relations from developing. If the patient met the nurse, before being admitted as a inpatient and the relationship developed , then that’s OK!